In hematopoietic stem cell transplantations(HSCT), bone marrow failure, malignant bone marrow-origin diseases, and bone marrow abnormalities are completely destroyed after which normal hematopoietic stem cells are injected to reestablish hematopoietic capability. This expands the scope of the treatment to hemopathies, solid cancers, and refractory genetic diseases1. More than 1.5 million HSCT have been performed at over 1,500 transplant centers worldwide2. In South Korea, the total number of of HSCT patients accumulated as of 2021 is reported to be 36,592, and hematopoietic stem cell transplantation is increasing due to diversification of transplant medical technology and expansion of Korea medical insurance coverage3. As the number of such transplantations performed has increased, the survival rates have improved not only South Korea but also worldwide. However, the number of patients experiencing adverse reactions to HSCT is also increasing with an increase in the patients of treatment4. Notably, patients undergoing HSCT face physical and mental stress due to the toxicity of pretreatment procedures, the transplantation process, and the long recovery time5.
The pretreatment procedures that patients undergo before transplants include chemotherapy and radiotherapy to suppress immune and hematopoietic functions and destroy cancer cells. After a transplant, they are hospitalized in a protective isolation unit in South Korea for the engraftment of hematopoietic stem cells6. The average duration of hospitalization in a protective isolation unit in South Korea is about one month and is the most important and difficult period for patients7. In the first two weeks of hospitalization, the patient is in the most physically debilitating state of extreme immunosuppression, during which they may contract various infections. They may also experience physical discomfort in the form of sore throat, pain caused by mouth ulcers, nausea and vomiting, salivary hypofunction or hyperfunction, diarrhea, helplessness, fatigue, shortness of breath, coughing, headache, tingling of hands and feet, skin pigmentation, and emotional symptoms such as frustration and depression8. Thus, they may experience a wide range of adverse events associated with HSCT, from minimal side-effects to life-threatening issues. Based on the manageability of their symptoms, patients face physical and mental risks that threaten their quality of life9.
Previous studies on the correlation between adverse symptoms and quality of life in HSCT patients found that the symptoms that patients experience had a significant effect on their quality of life and that effective management positively influenced this10. As effective symptom management can also reduce pain for patients and improve their quality of life, the International Association of Clinical Research Nurses (IACRN) noted that symptom management holds priority in their agenda. Studying symptomatic management among HSCT patients involves a medical approach to specific symptoms related to fatigue, stomatitis, and neutropenia11. While there are studies on symptom management in patients with multiple myeloma and acute myeloid leukemia 12,13, there is a lack of research on the symptomatic management of concurrent symptoms in HSCT patients. Therefore, it is necessary to understand the symptom experience of patients undergoing HSCT and provide effective symptom management for better quality of life. Thus, we conduct our study based on the application of nursing theory.
Among the various extant theories regarding symptoms, we chose the symptom management model, a middle-range theory developed by Dodd 14, as the conceptual framework for this study. This theory encompasses symptom experience, symptom management strategies, and symptom outcomes considered to be the result of symptom management strategies and symptom experience. It is important to measure the frequency, intensity, and pain degree for each symptom experience in symptom management. In symptom management strategy, positive consequences of symptom relief, reduced pain, prevention of recurrence, improvement in the quality of life, or negative consequences of symptom recurrence, consistent or increased pain, and decreased quality of life are the results of trial and error. Thus, the emphasis is placed on adherence to improve the effectiveness of symptom management strategies. Although there is a risk of nonadherence to treatment in the presence of multiple symptom management strategies, adherence remains important for symptom management and outcomes. Self-management among patients indicates a proper beginning to a symptom management strategy and reveals more functional, effective, and creative strategies to improve a patient’s quality of life.
Previous studies based on symptom management model were conducted on preoperative patients 15, children tumor patients 16,17, solid cancer patients 18, uterine cancer patients 19, and family caregivers of cancer patients20. Inconsistent symptom experiences were attributed to the diverse disease types previous studied, as the symptom experiences became more severe, the effectiveness of symptom management strategies decreased, and the quality of life reduced. However, based on the symptom management model14 that provides a framework to recognize and analyze the patient’s subjective experience of symptoms from different perspectives and the abnormal indicating signs of disease that can be detected by individuals or others, studies should be conducted on patients who have various symptom experiences undergoing HSCT. These should be done in protective isolation units and with appropriate symptom management and adherence.
We partially revised symptom management model to account for the economic feasibility of the research model and analysis and identify items helpful to nursing practice. Symptom experience, symptom management strategy, and self-management behavior were all included to assess individual aspects, including patients’ demographic characteristics, environmental aspects indicating the degree of support of family or medical staff in aiding self-management, health, and disease aspects associated with HSCT, and factors influencing the symptom outcomes. All factors such as symptom experience, symptom management strategy, and self-management behavior are related, and this study focuses on quality of life as a symptom outcome. Therefore, factors such as cost, morbidity, prevalence, and mortality as symptom outcomes were excluded. Therefore, our theoretical framework comprises subject aspects, environmental aspects, health and disease aspects, symptom experience, symptom management strategy, self-management behavior, and quality of life.
This study aims to provide basic data to develop a nursing intervention for effective symptom management of HSCT patients by identifying factor of symptom experience, symptom management strategy, and self-management behavior with quality of life, based on symptom management model14 ithin an integrated theoretical framework. Figure 1 shows this framework, identifying improvements in the quality of life of patients undergoing HSCT.